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It was a gloomy Monday in the morning in the autumn of 2016. I was working as a teacher, trying to settle a new group of students, when a sharp sensation erupted behind my one eye. Then came rapid stabs, like lightning bolts. As the school day progressed, the discomfort eased and then came back with increased intensity. Multiple times that day I left a teaching assistant with worksheets and ran to the school bathroom to soak my face with cool water. I tried paracetamol, but the pain remained unbearable.

The attacks returned repeatedly that fall, and once more in spring, soon establishing an annual pattern. The autumn months were the worst, then the late winter. I could anticipate the pattern: a warning sensation in the morning, early twinges on the commute, full-on agony in class by mid-morning. In late 2019, a doctor finally sent me to a specialist and I was diagnosed with cluster headache disorder.

This condition typically start with severe discomfort around a single eye that lasts for several hours.

About one in 1,000 people are affected by the condition, and men are more frequently affected. Cluster headaches usually begin with sudden, excruciating agony focused on a single eye that reaches its peak within a short time and lasts for as long as three hours. Attacks come in clusters, every day or several times a day, and are accompanied by tearing eyes, sagging eyelids or facial perspiration. I have an episodic type, which arrives in seasonal bouts; others have continuous attacks, defined by the absence of extended pain-free periods.

What unites sufferers is the intensity. One research paper rated the pain at 9.7 10, more severe than broken bones or other conditions. Another discovered 64% of cluster headache patients experienced thoughts of self-harm during bouts; the figure fell to four percent when they were not in pain.

One patient, in her seventies, a long-term sufferer from Pembrokeshire, isn't surprised. Her attacks began when she was two. “I would hurl myself on the ground and bang my head. That was attributed to being spoiled,” she says. Her symptoms worsened through childhood. Drinking in her teens, similar to several causes, made things worse. After drinking alcohol at her graduation party, she remembers hardly being able to see on the transport home.

Her relatives often interpreted her episodes as drunken episodes. Understanding eventually came from her parent and then from her husband, her spouse. “I was very fortunate to find such an exceptional person,” she says. Hobbs found office work after moving, but often concealed her illness. She was fired from one job, in part due to absences during episodes. Her breakthrough identification came in the early 2000s at a national hospital.

Still, the inability to plan life around erratic attacks took its toll. She particularly hated being unable to plan outings, being seen as unreliable as a colleague, and even having to be looked after by her family during the incapacitation caused by the worst episodes. “It robs you of the small freedoms we don't value until they're gone,” she says. She recalls obtaining tickets for a major concert, only to have an episode inside a portable toilet.

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Headaches have been documented across history. “The first description of headache comes by way of the ancient civilizations in antiquity,” write authors in a publication on the topic. They attributed the ailment to an evil entity who attacked his sufferers' heads.

Ancient healing records suggest unusual remedies for what modern observers would describe as a headache disorder. In the medieval times, severe headache was recognised as a distinct condition, with treatments including bloodletting to other, more superstitious cures.

It was a European doctor who provided the first detailed description of a cluster-type attack. In his medical observations, he describes a patient “suffering with a very intense headache happening and disappearing each day at fixed hours”.

The disorder were only officially classified by international headache societies in 1988. From the 1960s to the late 1990s, they were thought to be caused by a issue with a key artery which supplies blood to the head. Leading specialists in treating the disorder note this.

In 1998, scientists released the findings of a research project for which they had triggered cluster headaches in patients and observed the episodes in a imaging machine. The results, featured in a major medical publication, showed activation of the hypothalamus, which is responsible for human sleep-wake cycles, when patients were in discomfort, and a deactivation when they recovered.

In spite of such advances, diagnosis remains delayed. One man's attacks started in the 1980s and felt like “a modelling balloon being blown up behind my one eye”. Doctors thought he had sinus problems; he had multiple surgeries before eventually being correctly identified in 2014, after a doctor researched his complaints.

Specialists say delays in diagnosis and managing occur because patients are seldom seen during an episode. “You're exhausted and low, but not in agony,” one says. He works by eliminating other common head pain conditions, such as tension-type headache, before confirming the disorder. A detailed patient history is essential: on which side do symptoms occur? For how long? What season? Are there precipitating factors, such as certain foods? Specific characteristics such as tearing, drooping eyelids and stuffy nose help verify cluster headaches. Once diagnosed, patients may be referred to dedicated centers. But many first go to A&E or are given inadequate treatments.

A charity trustee, 78, has experienced the condition for most of her adult life, although she has been free from an episode since 2016. When she was in her twenties, she had her molars pulled because dentists misunderstood her pain. She believes dentists still need much more awareness. When another patient sought help from a charity, it was she who responded. I remember calling a helpline during an attack in 2021; a calm advisor guided them through oxygen therapy and medication until the episode passed.

Official guidelines on management recommend that patients are offered high-flow oxygen and/or a specific drug administered by injection. No oral painkillers or opioids should be used. Prophylactic choices include verapamil, which apparently helps manage the attacks of some people.

But leading neurologists believe the official guidelines need revising to reflect a clearer treatment pathway and help GPs avoid incorrect prescriptions. For periodic patients, timing is everything: “The length of the bout dictates the approach.” Short bouts with occasional attacks are handled with acute treatment only. More prolonged or more severe bouts require preventative medications such as certain drugs, sometimes paired with steroids. Many patients also receive a greater occipital nerve block during a bout – an procedure into the side of the head where the discomfort is that reduces nerve signals.

The national guidance need updating to reflect a